Women's experiences of lymphedema

To explore women's experiences of lymphedema.

Qualitative descriptive.

An urban community in the midwestern United States.

Ten women who experienced lymphedema after breast cancer treatment and who had (a) completed their treatment for stage I or stage II breast cancer at least one year before the study, (b) experienced an onset of lymphedema at least two months after surgery, (c) no current evidence of cancer disease or cancer recurrence, (d) lymphedema not caused by cancer in the brachial plexus, and (e) no history of hospitalization for alcoholism, substance abuse, or psychiatric conditions. The women ranged in age from 36-75 years. Mean survival time was seven years, and the mean time since onset of lymphedema was four years.

Two in-depth interviews per participant.

Most women were able to continue living their normal lives. Some women experienced depression, anxiety, and impairments related to their intimate, work, and social relationships. Physicians' limited knowledge about lymphedema, conflicting treatment information, and the limited number of available treatment centers caused distress for the participants. Their experiences can be categorized into three predominant themes: Abandonment by Medicine, Concealing the imperfect image, and Living the Interrupted Life.

Research efforts to expand the knowledge base regarding the epidemiology, prevention, and treatment of lymphedema are needed. Also needed is research that explores the impact of lymphedema on quality of life and functional ability as well as the psychosocial impact of lymphedema on body image, self esteem, and social support.

Care providers and breast cancer survivors should be educated about the prevention and treatment of lympedema. Nurses should refer patients to advocacy hot lines and support groups for information and support when appropriate. Women with lymphedema should be assessed periodically for psychosocial distress and referred for care as needed.